dignity talk: helping palliative care patients and families have important conversations

Conditions: Palliative Care; Family; End of Life Care

Summary: dying patients and their families face many challenges near the end-of-life. not only do patients often experience physical distress, but they also have feelings of loss of dignity, isolation, and uncertainty. family members also face many challenges. they bear witness to the suffering of loved ones, and they face uncertainty, loss, and at times a mounting sense of helplessness. the purpose of this study is to introduce and evaluate a new intervention called dignity talk, meant to enhance end-of-life experience for both patients and their families. dignity talk is based on a set of questions by which terminally ill patients and their family members can engage in meaningful conversations with each other. it is intended to lessen feelings of loss and helplessness and enhance feelings of connectedness by facilitating conversations that tap into a sense of meaning and purpose, sharing of memories, wishes, hopes, and giving guidance to those who will soon be left behind. in phase 1, 20 patients and family members will help finalize the method and dignity talk question framework (is it easy to understand, do the investigators have the right questions, and is the wording sensitive). in phase 2 of the study the investigators will ask 100 patient-family pairs for feedback about dignity talk: what influence it had on their palliative care experience, whether it works well, and whether this intervention should become a regular part of palliative care. the investigators will also ask for feedback from health-care providers in both phases. we are requesting approval for an amendment to the healthcare provider feedback focus group questions. will add those documents when they are approved. four to six months after the death of their loved one, the investigators will contact the family member to ask their thoughts about dignity talk, how it shaped their experience of their grief and bereavement. the investigators expect that the study will show that dignity talk can be an effective, highly accessible palliative care intervention, which will enhance the end-of-life experience for palliative patients and the families who support them.

see above summary

Eligibility criteria:
inclusion criteria: for patient: patients being cared for: * in a palliative care unit or whose care is focused on palliation as determined by clinical staff * or patients who have have a confirmed diagnosis of amyotropic lateral sclerosis, and have symptoms in a domain that interferes with their social or occupation functioning: a) mobility, b) dysphasia, c) dyspnea, or d) speech or patients who have are have been on dialysis \> 3 months and are \> 60 years of age - or residents of personal care home all of whom are: * 18 years of age or older * able to provide informed oral and written consent * cognitive capacity (based on clinical consensus) for family member or close friend: * family member or close friend who the patient identifies they would be comfortable talking with using the dignity talk question framework * family member who is 18 years of age or older * family member who is able to provide oral and written consent * family member who has cognitive capacity to participate in meaningful conversation (based on research staff decision) for healthcare provider: * employed one of the participating sites * in a discipline directly involved in clinical care (physician, nursing, social work, spiritual care, allied healthcare, etc.) exclusion criteria: * not meeting the above inclusion criteria

Keywords: palliative care family adaptation, psychological